Chronic Renal Disease and RA: Hi Has anyone developed... - NRAS

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Chronic Renal Disease and RA

Gitaga profile image
16 Replies

Hi

Has anyone developed Chronic Renal Disease whilst on treatment for RA.

My kidney function is declining and I am a sensible eater.

I am guessing it's probably the meds. I am on MTX, prednisone and leflunomide.

I am seeing my Nephrologist tomorrow. Really worried now. 😏

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Gitaga profile image
Gitaga
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16 Replies
helixhelix profile image
helixhelix

Medway-Lady has renal disease. In her case due to a very rare side effect of PPIs, but end result the same. So maybe she’ll pop in? Or you could message her. You can manage with quite low kidney function...

Gitaga profile image
Gitaga in reply tohelixhelix

Thank you. I hope she weighs in.

LoneEra profile image
LoneEra in reply toGitaga

Just FYI, you can tag her into the conversation by using the @ sign and typing her username (a list will pop up). I’ll do it for you now: medway-lady could you possibly share your wisdom? Thanks 😊

medway-lady profile image
medway-lady in reply toLoneEra

I've been out as first day of freedom and in the sons garden as he lit the Chimera. xxx But as a vegan he didn't have any sausages to roast. !! lol xx

LoneEra profile image
LoneEra in reply tomedway-lady

Hahah. Sounds lovely, especially without sausages (I’m veggie)! Xx

Gitaga profile image
Gitaga in reply toLoneEra

Thank you 😘

medway-lady profile image
medway-lady in reply tohelixhelix

Just replied xxx

Kags1068 profile image
Kags1068

Yes, I seem to have developed some kidney impairment too. Mine seems to be as a result of long-term use of Cyclosporin (27 years) and possibly Meloxicam (22 years). I've had JIA for 38 years.

It's been worse recently which may be as a result of recent surgery. My creatinine went upto about 132, which I think roughly equated to an egfr of about 39. My doc was a bit concerned, so I've had to suspend Meloxicam and increase Prednisolone. By last week the creatinine had reduced back to about 115 which is nearer to my average. I think that level (115) is in line with stage 3a CKD?

I try not to worry too much because as Helix says, you can function pretty normally until your egfr goes surprisingly low. Mine is monitored 4 weekly and more if, like recently, the creatinine rises. I haven't yet needed to see a nephrologist. I believe that up until a certain point the treatment is just watch and wait. My rheumatologist is happy to do this. It's a tricky one to balance because stopping drugs could mean a return/rise of inflammation which I'm sure you are very aware of!

I hope your nephrologist is able to give your more information and re-assurance at your appointment tomorrow.

Do let us know how you get on.

Best wishes 😊

medway-lady profile image
medway-lady

I have CKD it was an injury in 2018 now by time its CKD. Try not to worry a lot and you can PM me direct. I took LEF and Omeprazole and it's thought to be the Omeprazole that caused the problem So I'm now at 25 % eGFR and life is ok, I'll never walk up Snowden again or ramble across the marshes but I can and do enjoy most things. I crash landed at 8% spent about 14 days in hospital but did get some function back. Nephrologists are really the boss now they make so many of the decisions and do talk to the Rhuemy's. Although I was taken off LEF, Azathoprine works as well. I also take Etanercept and my RA is still under good control. I had a biopsy (it doesn't hurt just a loud bang) and no diet either as eat healthy anyway. Good luck tomorrow and a AKI can be caused by loads of things, I had no risk factors at all, was fit and even with RA active and mobile. Try not to Google symptoms and one good thing about CKD is it isn't painful but the fatigue can be awful. The Kidney Patients Association has some good advice and I did go to counselling as it is one heck of a shock. xx

PS I'm sure that your Nephrologist will explain that CKD is really well looked after by the NHS, you'll get advice, access to a Pharmacist who can check if a med prescribed is at the right dose for your function. In fact the Nephrologist rings back faster than the GP does and its all first names so really takes a lot of the fear and stress of what the future might hold away. I just think, I got an AKI but not something a lot worse. Do PM if you need a chat and maybe I'll see you at a Kent Kidney Patients Zoom meeting if not find your local branch it is really good to talk to people who do know and can tell you life is still good, and its a life changing event and thats it , its life changing not life destroying event. Equally give yourself time to think that life might have taken an unexpected turn but you could recover some function too.

Amy_Lee profile image
Amy_Lee

I am taking the same drugs you mentioned here. But I stopped prednisolone slowly after Mtx started to kick in, that was in early 2015. So far I don’t have any problem with my kidney. Can’t contribute much on your problem. Hope you will find a reason soon.

Jacey15 profile image
Jacey15

Yes I have too. My appointment with nephrology is 4th May. My Rheumatologist has done loads of additional antibody testing in advance of my appointment but they were negative. Let us know how you get on x

Gitaga profile image
Gitaga

Hi thereThank you all for your detailed comments.

I appreciate your concern and empathy.

My Nephrologist did say that kidney damage is something I will have to live with.

But according him it's not all doom and gloom. I should have a normal life provided I am sensible about meds and I have to keep my BP in check.

He suggested that I continue with the RA treatment, because stopping it will have a disastrous effect.

However, he urged the importance of limiting or better still, not taking any anti inflammatory medication.

I do feel at little relieved but it is still worrying especially because of the coronavirus.

I am in SA. We are behind with the vaccination program. So that, at the moment, is a dream.

medway-lady

Our public health system is totally different. I have to see a specialist for these specific conditions and they are pretty expensive.

I hope that I have made a contribution to those with both CKD and autoimmune disease.

Love to u all.

Kags1068 profile image
Kags1068 in reply toGitaga

Hi Gitaga

I'm glad to hear your appointment was re-assuring for you. Hope you feel a little less worried now.

Unfortunately with a condition like RA it seems like we are always trying to find a balance between the right amount of meds to adequately control things, and managing possible side effects of such meds. It often seems a very fine line to tread!

Your Consultant definitely echoed all the things I'd been told. Unfortunately, at the moment I've had to suspend my anti-inflammatory (Meloxicam) as they are as well known to cause kidney problems. I can well imagine your doc would encourage you not to take them if at all possible.

So sorry to hear your health system is so expensive. We are so lucky here to have the NHS, and it reminds me yet again every time I read something from a member not in the UK.

It was interesting to read your post and I hope you stay as well as possible 😊x

medway-lady profile image
medway-lady in reply toGitaga

Yes its hard when its expensive and our NHS is very good. I've not had any NSAIDS for over 15 years as my RA is controlled so did nothing to provoke my injury. If there is any suspicion that your meds caused the problem I'm sure that they would be stopped or changed but do beware often common medications like pain killers and antibiotics have to be taken at a reduced dose so make sure you check with your prescriber to make sure they know your function just to be sure. I wish you well and hopefully you're now reassured that having spoken to a Nephrologist that this is a problem but nothing to panic over. Do make sure you drink plenty of water as dehydration does affect kidney function and also if prone to UTI's that you don't leave getting antibiotics. x

Jacey15 profile image
Jacey15

Just a bit of reassurance - my dad has had chronic kidney disease for around 10 years, is 76 years old and still working full time as a farmer.

Gitaga profile image
Gitaga in reply toJacey15

Wow that's amazing. Thank you

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